Sensing Light

by Mark A. Jacobson

  She gave him a self-assured smile.

  “I’ve never had a problem with people running over me.”

  Herb chuckled. He knew Karen had played college basketball before medical school. After she left, he reflected on how confident this young woman was. Cecilia had been confident at that age. She was even more so now, as were many middle-aged women he worked with, women like Gwen. But Karen was taking it to a new level.

  Thinking of Gwen made him uneasy. Had he come across dogmatic and insensitive at the noon conference? Would she hold a grudge against him? Their connection when Laurie Hampton tested positive hadn’t lasted long. Their subsequent encounters were awkward. He guessed that what she had divulged was too threatening for her to want any deeper friendship to develop. He had to admit his own confession had made him cautious too, which was unfortunate because he liked and respected her. Gwen was different from anyone else he knew well. Decidedly more unconventional, and that was appealing. It would be nice to have someone at work he could confide in besides Kevin.

  Herb tapped on Gwen’s half-open office door.

  “Come in,” she said.

  She was writing on a yellow legal pad.

  “What happened with Ms. Diaz?”

  Gwen frowned.

  “I think she understood what we were telling her, how unlikely it is she’ll ever breathe on her own again. Her brother was there. She kept looking to him, but he didn’t want to influence her decision. Then she shut down. Nothing was resolved.”

  He nodded solicitously.

  “Gwen, if you choose aggressive life support for Ms. Diaz, that decides it. She’s your patient.”

  Gwen sighed and said, “I know letting it end is the humane thing to do. But if we were to buy enough time for her kids to get here while she’s still conscious…I can’t discard that possibility.”

  “I wouldn’t either. Sorry, I didn’t mean to sound callous earlier.”

  “Herb, you’re not callous. I know that.”

  “There’s no DNR order in the chart, and there won’t be until you sign one. OK?”

  “Thanks.”

  Gwen glanced down at her yellow pad. Herb sensed she wasn’t angry at him now but wanted to end the conversation. He slipped out of the office without saying goodbye.

  Back in the ICU, Herb was washing his hands at the sink. He saw Laurie Hampton seated on a stool, legs crossed, making notes on a heart monitor printout.

  She seems content, he thought. Has it really been two years since Gwen told me about her antibody result?

  Laurie had never told him, and he had never said anything that could remotely imply he knew. He had tried a couple of open-ended questions, giving her the opportunity to talk about it. She hadn’t disclosed.

  She looks OK. Maybe she’s one of the lucky—what Kevin calls healthy, long-term, non-progressors. And the accident was five years ago.

  That was pleasant to contemplate until he began wondering how she handled the uncertainty. For him, it would be a rodent inside his belly gnawing constantly.

  Laurie saw Herb looking at her.

  “Got a minute?” she asked.

  “Sure.”

  “I’ve been working on a quality assurance project, comparing our policies for invasive procedures to what the residents document in the chart after they’ve put in an arterial line or central venous catheter. I have some data.”

  “I’ve got time now.”

  “Great. I’ll get my file.”

  Businesslike, Laurie described the problems she’d unearthed. Nothing too alarming, he thought, which was her assessment as well.

  “We could do better,” she said. “But nobody’s going to find their name in the newspaper.”

  “That’s good to hear. Thanks for the update.”

  He reached for her arm. His fingertips grazed her sleeve. She was closing her file and didn’t notice.

  An hour after Herb left the ICU, Karen Packard came in to check on a newly admitted patient.

  Laurie approached her and signaled toward the break room with her eyes.

  “When you’ve got a moment,” she said.

  Karen nodded.

  As soon as the two women were seated, Karen asked, “Did she repeat your T cell count?”

  “Yeah,” Laurie replied darkly. “It was under four hundred the second time, too. They’d always been normal before.”

  “Does Tanya know?”

  “I haven’t told her yet. I’d like to have a plan for what I’m going to do first.”

  Karen looked puzzled.

  “About the trial. This means I’ll be eligible when it opens. Stanford will be a site, so I could enroll there without anyone here knowing I’m infected.”

  “Oh, right. God, that’s a tough one. AZT or placebo, maybe for years before anyone knows if it helps.”

  “Yeah, tough decisionsville,” Laurie muttered.

  “You should talk to Herb or Kevin Bartholomew. They both have lots more clinical trials experience than me.”

  Laurie raised an eyebrow.

  “You’ve got to be kidding. Besides you and Gwen Howard, nobody else here knows. And I don’t want anybody else to know. I do not need people at work pitying me.”

  “Herb won’t tell anyone. He’s a good guy. You said you trusted him.”

  “Not that far.”

  “He’s been doing randomized trials for longer than anyone here. He could look over the protocol, answer your questions. He’d be a terrific resource. You know he’d love to help you.”

  “Herb is a very nice person. I’m sure he’s full of good intentions. But he’s way too opaque for me to share something like this. I can’t tell what he’s really feeling.”

  Laurie looked back at her coffee. Her left leg bounced nervously.

  “I’ll think about it.”

  X

  GWEN DIDN’T SEE KEVIN again that day. After a family dinner of take-out burritos, Eva did homework in her bedroom, and Rick went off to play poker with his buddies, leaving her alone. She wanted to call Kevin but resisted the urge. She chided herself on what a basket case she had been. From now on, this had to be about his needs, not hers. Marco didn’t have much time left. Kevin shouldn’t be wasting any of it allaying her fears. She wished she could tell Rick. She knew she could swear him to secrecy. He wouldn’t break the pledge. Still, it would be a betrayal, and she’d already let Kevin down once today.

  She was tempted to open her Christmas present from Nan, a fifth of good Scotch. She picked up a glass then put it away. Gwen doubted drinking would do anything other than make her depressed. For the rest of the evening, she watched stupid television sitcoms that Eva had outgrown.

  Tuesday was better. She had five minutes alone with Kevin in the morning and spent it giving him a neck massage. His optimism lifted her spirits. Her mood further improved in clinic as a succession of patients told her how much they appreciated her help. Then Allen Schwartz came into her exam room.

  A New Yorker in his early twenties, Mr. Schwartz had recently finessed his escape to the Castro by persuading his father to open a branch of the family jewelry business in the Bay Area. At his first appointment, he had shown Gwen a purplish growth on his leg, which she biopsied. As expected, the pathology report was Kaposi’s sarcoma. The disease usually spread slowly, but she saw many new lesions at his next visit and advised him to get chemotherapy. Allen was not interested.

  Today, his cheeks and eyelids were involved. He wasn’t able to shut his right eye completely. Though she had taken care of dozens of patients with Kaposi’s nodules on their face, Gwen couldn’t keep from imagining Allen out in public, the reactions he must get, how it would feel if everyone looked at you with revulsion.

  “Have you thought any more about chemotherapy?” she asked.

  “No chemotherapy,” Allen said, pointing to his nose. “This isn’t Kaposi’s.”

  “It’s not?” said Gwen, flabbergasted.

  “Nope. I went to Dr. Williams in San Jose. He’s an infect
ion expert. He told me these tumors are caused by syphilis. Take enough penicillin, and they’ll go away.”

  He opened his shirt, revealing a coil of plastic tubing taped to his chest, one end entering the skin under his collarbone.

  “I do the infusions myself at home every six hours,” he said proudly. “Dr. Williams got a nurse to bring all the supplies and change the dressing every week.”

  That bastard, thought Gwen. She had heard about Doug Williams and his syphilis scam. A small case series of AIDS patients who had syphilis invading their brain had appeared in a prestigious journal. It had been publicized by the lay press, even though this rare complication of syphilis had been known for a century to occur in people with normal immune systems and there was no evidence from control populations to prove it was any more common in HIV-positive individuals than HIV-negatives. A few predatory doctors had capitalized on the anxiety generated by the report. They prescribed long courses of intravenous penicillin treatment for AIDS patients who had no symptoms of syphilis and negative blood tests for the disease. In return, they received lucrative kick-backs from home infusion companies.

  “My parents were ecstatic when they found out I don’t have cancer. They’re paying all the medical bills.”

  Gwen tamped down her fury enough to speak calmly.

  “I don’t want to rain on your parade, Mr. Schwartz, but taking IV penicillin doesn’t make sense. I’ve checked your blood for syphilis several times, and the results were negative. The test for syphilis infection is very, very accurate. People with syphilis don’t have negative results.”

  Allen was unfazed.

  “Look in the mirror,” she said, unable to restrain herself. “Those lesions aren’t shrinking. They’re getting bigger.”

  “Williams says that’s just temporary. He told me the tumors might swell while the bugs are being killed and spill their guts out. See, he knows what he’s talking about.”

  “Please, Mr. Schwartz, think it about it. Months ago we did a biopsy. If it was syphilis, the pathologist would have seen the microbes. I’m sorry, but the truth is you’re being duped by a charlatan.”

  “You’re the charlatan, Dr. Howard,” Allen shouted. “All you’ve offered me is poison. Dr. Williams says chemotherapy will destroy what’s left of my immune system and let the syphilis get into my brain. That makes sense.”

  Gwen backpedaled, trying to salvage some line of communication.

  “Mr. Schwartz, I respect your deciding how you’ll be treated. It’s all right with me if we don’t agree on this issue. I’m happy to keep being your doctor. Come back and see me in a month, OK?”

  “I’ll think about it,” said Allen coolly as he buttoned up his shirt.

  The next morning, Gwen took Eva to her school bus stop before driving into San Francisco. While coasting downhill in her 1966 Volvo, bleached of its original turquoise sheen, she thought of Allen Schwartz. Her rage at the South Bay physician preying on him was spent. It was the poignancy of Allen’s situation that still disturbed her. He was twenty-three years old. He couldn’t process his impending death. He hadn’t even finished growing up. She looked protectively at Eva, who was gazing out the window.

  As they passed Lake Merritt, Gwen saw geese, skeins flying in V formations, gaggles waddling across the moist green meadows. She rolled her window down to inhale the air, fresh from last night’s rain. At a stoplight, Eva spoke for the first time since they had left the house.

  “I don’t trust any of my friends.”

  Gwen’s initial reaction was fright. Did I just have an auditory hallucination? It’s impossible that Eva would tell me something so intimate.

  Gwen reined in her panic. I’m not having a psychotic break. My brain must have misinterpreted sounds coming through the window. Maybe it was the voices of joggers running around the lake.

  Then she reconsidered what she had heard. The words had been spoken exactly as Eva would say them.

  She rolled up her window and said, “Sorry. You said you don’t what?”

  “Trust any of my friends,” Eva replied, as if talking about the weather.

  Gwen had another extraordinary sensation, like an unexpectedly delicious bite of food. She felt a rush of joy and immediately clamped down on it. Nonchalance was the key to keeping this dialogue going. But what to say? She scrambled frantically to find the right tone.

  “So, why do you think that is?”

  Creases formed above Eva’s silky black eyebrows.

  “I don’t know. I guess because they’re all shallow.”

  Gwen quashed her amazement and maintained a pretense of mild, nonjudgmental interest.

  “Yeah, I think I understand.”

  Eva didn’t seem to be offended but said no more.

  Gwen double parked in front of the bus stop.

  As Eva got out of the car, Gwen said, “Hey, kiddo. It’ll get better, much better. Believe me. You’ll see. Your friends will become comfortable being real about who they are, and so will you.”

  Eva looked dubiously at the approaching bus.

  “Thanks, Mom,” she said with a sigh and closed the door.

  At the hospital, Gwen went first to the clinic to retrieve her stethoscope, forgotten after her row with Allen Schwartz. She passed the treatment room and saw her longest surviving retinitis patient, Hubert Wilson. Once Kevin’s patient, Hubert had switched to Gwen after his kidneys nearly failed during an experimental drug trial. He waved to her from a recliner chair where he was connected by intravenous tubing to a bag of ganciclovir. While the solution dripped, Hubert drew. A sketchbook lay on his lap. A tin of colored pencils was balanced on his armrest.

  Hairless from chemotherapy that kept the Kaposi’s sarcoma on his legs from enlarging, Hubert was the least demanding of the retinitis patients per the nurses. Although cytomegalovirus had destroyed much of his vision, he showed no signs of the profound depression that often afflicted these people.

  He had no light perception in his left eye, the result of a retinal detachment. A blind spot in his right eye was large enough to eliminate half of his visual field. But he could still read. More importantly to him, he could still draw.

  Ganciclovir treatment required sitting in clinic three hours a day, five days a week. Hubert used all this time to work on an illustrated book. Whenever Gwen had a few minutes to spare, she stopped by to view his progress.

  Some of his drawings depicted wild gatherings in the style of Breughel—a local bath-house bacchanalia, a Castro street party, the interior of a South of Market leather bar. Others reminded her of William Blake paintings with modern stand-ins for devils, angels, and the fall from Eden. The accompanying text told the story of an art historian with AIDS trying to finish a definitive tome on the Depression-era murals inside Coit Tower on Telegraph Hill. Gwen had seen the murals, a paean to California industry and agriculture, and had read about the artist’s controversial allusions to a bloody longshoremen’s strike.

  She sat on the unoccupied armrest and watched him color in his sketch of a priest wearing a nylon flight jacket over his clerical collar. The man was in conversation with a disheveled drug dealer whose open palms held out pills and packets of powder for passers-by to ogle. Hubert took a break and handed her a book of completed drawings. She paged through to her favorite one. In the foreground, a woman with a crew cut and huge biceps was mounting a motorcycle. Sidesaddle behind her was a transvestite wearing a slinky dress, a blond wig, red lipstick, and white pancake make-up. She had a mole on her left cheek like Marilyn Monroe. In the background marched a line of starving men, chained together at the ankles, clad only in bikini briefs. Their bodies were covered by boils and Kaposi’s lesions. Above this scene, a long-bearded, elderly black man in a dashiki stood on a cumulus cloud. He held a thunderbolt over his head.

  How wonderful that he has this creative outlet, Gwen mused. She wished she had one. She thought about taking an art class. Just an evening a week. I could find the time for that, couldn’t I?

 
XI

  KEVIN HAD GONE INTO work early and came home at noon. When he opened the front door, the house was quiet, too quiet. Marco always had music on during the day—jazz, rock, tango, blues.

  “Hello?” he called out.

  Merciless quiet enveloped him.

  He found Marco in bed, eyes closed, breathing normally.

  “Wake up,” he shouted.

  Marco didn’t respond. Kevin screamed in his ear. Marco still didn’t respond. He pinched the flesh between Marco’s thumb and forefinger. Marco lay flaccid. He pressed his knuckles into Marco’s sternum, twisting downward with more and more force until Marco moaned feebly and lifted his right arm.

  Kevin curled himself into a ball on the floor and rocked in a futile attempt to repel the facts pummeling him. Marco couldn’t speak. He couldn’t move half his body. It was unlikely he would ever do either again. Kevin’s only escape route was to think rationally. He ticked through a checklist he knew by rote. Marco must have had a stroke, or a mass was growing in the right side of his brain. There was one treatable possibility, Toxoplasma infection. If it was anything else, Marco would survive a week, two at most. Even if this opportunistic parasite was the cause, it was probably too late for any meaningful recovery.

  Kevin phoned in two prescriptions to a pharmacy on Castro Street and ran to his car. On returning, he placed a pill on the back of Marco’s tongue, added a teaspoon of water, massaged the sides of his throat to make him swallow, and repeated the process.

  He hadn’t called an ambulance. Marco had consistently been clear about not wanting extreme measures. Taking him to the hospital is pointless, he had thought at first. Now he wasn’t so certain. He put the internal debate on hold. Herb would be here soon. He could decide.

  Kevin went to his desk and composed a to-do list—call Mexico City, cancel everything at work for the next two weeks, find Marco’s signed will. Nothing else came to mind. He gave up and sat beside Marco, who lay inert except for the rise and fall of his chest.